Venezuelans with HIV make tough choices as medicine becomes scarce

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CARACAS, Venezuela (CNS) — Gloria Gallardo, 59, and her granddaughter Diana Diaz, 14, woke before dawn for the two-hour bus ride into Caracas. Although they had made the journey hundreds of times before, this time felt different. They worried about the news they might receive from Diaz’s doctors.

Normally chatty, today they mostly remained silent, with different scenarios running through their heads.

Diaz was born with HIV and hepatitis B and has lived with diabetes since she was 9. Several weeks earlier, she learned her antiretroviral drug, Viraday, might become the latest medication added to the growing list of medicines not available in the country. Further complicating her health, Diaz had lost 11 pounds because her unemployed grandmother could not afford to buy enough food.

In their home, pasta, rice, bread and condiments have all been eliminated in favor of yuca, pumpkin, plantain, and whatever other vegetables they can afford. The diet changes helped control Diaz’ diabetes, which is good because stores did not have the medicine to control her blood sugar.

“The doctor said if she continued losing weight, they would take ‘measures,'” said Gallardo. “Those ‘measures’ were that they would send her to a shelter.”

Although Diaz had been given two alternative medications in case Viraday was not available, Gallardo did not know how that might affect her health. And neither knew what living a shelter might entail.

The night before their trip to Caracas, Gallardo heard that Viraday was not available in some places.

“It terrified me even more,” she said.

During medical trips to Caracas, the two stay at Nuestra Senora de la Esperanza (Our Lady of Hope) house, run by the San Luis Home Foundation. The foundation offers lodging to mothers and children with HIV who live outside of the capital and travel to the city for medical treatment.

Giant teddy bears line the couches in the common area; a bookshelf is full of children’s’ books; and a large dining room can serve dozens. Mothers and their children sleep in dorm-like rooms with bunk beds.

The foundation provides food, transportation to and from medical appointments, and even pays for checkups in private clinics if needed. It operates solely on private donations.

Father Jose Luis Lofrano has managed the home since 2011.

“There was a serious problem here, that children with HIV came to the city, they couldn’t stay, and they would leave without their medicine,” he said.

He said he has seen how the conditions for those with chronic conditions like HIV have, in many cases, turned from worrisome to dire as the country endures its fourth year of an economic crisis.

Venezuela’s economy has collapsed in recent years, with inflation projected this year to reach 720 percent. As oil prices have dropped, the government has run out of money to import many foods and medicines at affordable prices. Over 90 percent of the country’s foreign revenues come from oil sales.

Many Venezuelans have cut back on the number of meals per day. One study showed that 75 percent of people in the country have lost an average of 19 pounds.

That means that many managing medical conditions like HIV must worry not only about their medication, but about putting food on the table.

“This is a vicious cycle,” said Father Lofrano.

He explained how he has seen many of the families his foundation helps unsuccessfully try to juggle the various problems they face. This year he noticed some mothers living with HIV were selling their medications to buy food.

“She may have fixed the problem for a day, but in the long run, maybe in a few months, she will die,” he said.

And that’s what happened.

Four women who stay at the home with their children have died this year after stopping their HIV treatment. Two others who had previously been enrolled in the program also have died.

Father Lofrano said those mothers did not have much choice. They could either not feed their children or they could sell their treatment.

“We’ve had people who arrive at the home and faint from the hunger,” he said. “The only good meal they had received in weeks was with us.”

He also has seen HIV-positive mothers with infants decide to breastfeed their infants as a last resort after not finding baby formula. Their babies contracted the virus as a result.

Organizations like the San Luis Home Foundation that help HIV patients have struggled to keep up with the growing need.

For decades an HIV diagnosis meant a death sentence. But today the virus can be controlled by daily medication, and those with proper treatment can live a relatively normal life. Stopping treatment allows the virus to attack the body’s immune system, and those with the condition can develop AIDS, leaving them susceptible to common infections that can turn fatal.

Aid for AIDS founder Jesus Aguais has sent HIV drugs to Venezuela since 1997. He warns that the situation in the country could start to resemble that of the ’80s and ’90s, before effective HIV medications had been developed, when many HIV patients developed AIDS and died.

While official numbers are not released, his group estimates that 80 percent of the 77,000 Venezuelans being treated for HIV have not had access to their medicine for the past nine months. Some doctors have said that figure could be around 40-50 percent.

Such people are “being mentally tortured,” he said from his office in New York. “Knowing that you need a medication, and the government is supposed to give to you, and you don’t know if you’re going to get it. It’s torture.”

Numbers tracked by his group show that 2,100 people died of HIV-related causes in 2012. This year in one state alone, Carabobo, 1,600 people have died.

Aid for AIDS has stepped up its fundraising efforts to help those living with HIV. This year it hopes to send $4 million worth of medicines as well as baby formula for thousands of babies.

Aguais must find ways to sneak those supplies into the country. The government recently revoked the group’s permit to donate medicine. Venezuelan officials have continually denied the country is suffering from a humanitarian crisis.

Aguais said he worries not only about HIV patients, but also about the broader public health concerns of having a large percentage of patients unmedicated. HIV patients who don’t take their medication are much more likely to pass on the virus. Complicating the problem are shortages of the kits to detect the viral load and CD4 count, which indicates whether one has a healthy immune system.

That multitude of issues could result in a spike of new HIV infections in the country, where the last official figures estimated that 120,000 people could be living with the condition. Aguais believes that number could be far higher.

“We are talking about a catastrophe however you look at it,” he said.

For now that catastrophe has not fully struck Gallardo and Diaz. Gallardo stared sternly at the hospital nurse attending the window at the children’s hospital where she picked up Diaz’s medicine.

“Vidaray,” she said, passing the prescription under the metal bars separating her from the nurse.

She sighed as the nurse turned her back, clearly heading to the shelf to look for the medicine. They had it.

Also to their relief, Diaz had gained back a few pounds, which Gallardo credits to the help offered at the San Luis home. It was the only place they had been able to eat rice.

In one month, they’ll need to look for another bottle of pills in Caracas. Gallardo will need to scrape together enough money to buy food so her granddaughter can continue to put on weight. Gallardo has lost 23 pounds.

At Nuestra Senora de la Esperanza, Father Lofrano and his team will keep tabs on Gallardo and Diaz as best they can.

“This is our second home,” said Diaz as she sat on the couch surrounded by teddy bears. “Here, the doors are always open.”

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